It’s been a year!

Posted byhenrystifelPosted inUncategorized

September 22, 2021

I apologize for not being too communicative. It continues to be a grind and, frankly, I just run out of steam after a long day. I am well into my second group of 80 sessions and currently have about 30 more to go to complete the study. We have made great progress and hope to build upon it.

Yesterday was our one year anniversary in Louisville. It has been a long journey and we still have a good deal of work to do, but I think we’ve accomplished a lot for the research field and personally. We have shown the research world that if you can regain some degree of independence in your limbs as well as improve bodily functions like blood pressure after being in a wheelchair for nearly 40 years, there is no reason to draw an arbitrary line in the sand of years post injury that would exclude an individual from a research study. As we approach Christopher Reeve’s birthday on September 25 and continue to recognize spinal cord injury awareness month, this project continues to change lives and prove many research naysayers wrong.

To date, my personal physical best when it comes to standing has been 16 ½ minutes without anyone supporting my legs. Only support being provided to me was on my hips and chest. 16 ½ minutes… nothing supporting my legs other than my ability to direct the energy to my quads and glutes. In addition, I was able to do another four minutes on my left leg. So that was 20 ½ minutes where nobody was supporting my left leg. Hard to believe but true.

The video I share is a bit dated, but I think it is fun because the techs give a pretty enthusiastic thumbs-up to prove that they are just there to provide support when needed.

After we complete the remaining sessions, I will have a couple weeks of testing as my final assessment measurement for data comparison. Once complete, we will enter into the last phase, which they refer to as inner systems. This is when I get to be trained to do the things that I was not allowed to do during the study that other participants might have been randomized into. Essentially, core exercises and voluntary movement. If you go back to the beginning of my blog, you will see videos of these activities. It will be an interesting journey because, as you might recall, I struggled with high blood pressure. We are going to remap for these activities and hopefully we have more success.

Time will tell.

9 thoughts on “It’s been a year!”

  1. Henry! This is such good news! Standing on your own for almost 20 minutes brought tears to my eyes. It’s incredible and we are so happy for you. It’s invaluable what you are doing and we are thrilled for the spinal cord research progress you have made. Richard and I wish you continued success as you step into strengthening your core muscles next phase!

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  2. This is awesome news Henry! Thank you for helping instill realistic hope to those of us who have lived with paralysis for a few decades. Proud of you my friend and look forward to following your continued progress and movement journey.

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  4. Amazing!!! So happy for you. Would love to catch up soon…,,
    Donna

    (Can’t believe you’re their a year already, wow ! Miss you here)

    Sent from my iPhone

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  5. Henry and Mary, I have just now returned to your blog. So much personal progress of which to be proud!!! And to be a success story of hope for those with longer spinal cord injury history must be rewarding in itself. You are a hero! We love you!!!

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  6. Incredible progress and accomplishments !! The research is so important and it is truly miraculous in how it has impacted the entire SCI community ! Bravo 👏 To you and the team — xx Stephanie

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  7. Henry, can’t believe it’s been a year! How time flies? And, can’t believe you’re standing up with no leg support for 20 minutes! I’m trying to figure out what is more awesome…the fact that you accomplished this amazing feat….or the fact that you went hang gliding afterwards!! Mary, thank you for chaperoning Henry through all of this. In addition to all of your love and support, we all know this young spirit needs adult supervision. :). So proud of you both. You inspire us every day!

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